A Difficult Pregnancy

“How sick is my baby?” I asked. “Out of ten, how sick is he?”

It was a blunt question but, with only ten weeks until I was due to give birth, I needed to know.

My obstetrician looked me in the eye and answered with a simple and heartbreaking, “Eight.”

My much longed for baby had a right sided congenital diaphragmatic hernia and was not expected to survive for more than a few minutes after being born.

The final weeks of my pregnancy were filled with the strange combination of preparing for my baby’s birth as well as preparing for his death. It felt unnatural and wrong. As if even thinking about his death was an act of betrayal.

I withdrew from friends and avoided going out because well-meaning strangers asked about my pregnancy.

“Yes, the baby’s due in June,” I would say.

“No, we don’t know what we’re having.”

“Yes, that’s right, as long as it’s healthy.”

Each time I smiled and pretended everything was okay pieces of my heart crumbled.


Kirsty and her son Bobby in the days after his birth
Photo Credit: Jason Van Koll of Heartfelt – www.heartfelt.org.au

The knowledge that I was unable to protect my own child formed a veil of despair and guilt that shrouded me from the outside world. I was surrounded by my loving family, who were also shocked and saddened by his diagnosis, but I had never felt more alone.

I wished I could compartmentalise my life – make it less messy. I wanted an area for work, a space for grief, a box for worry, a corner for love. But instead, my terror and pain spilled over and contaminated all aspects of my life…even Ted, my 3-year old. I tried to protect him from my pain but I’m sure he saw through my tight smiles and over-zealous hugs.

Friends didn’t know what to say and I didn’t know how to make them feel more comfortable. I didn’t have the energy to try. People I hadn’t seen in years came out of the woodwork, some genuinely concerned and supportive while others were drawn to the drama – like onlookers at the scene of a car accident. I didn’t want to talk to any of them.

Traditionally in China, when children are born, they are already considered to be a year old. I like this concept. It acknowledges that babies have been living long before we meet them.

It gave me comfort to think that even if my baby didn’t survive outside of my womb, my baby had lived.

He was already a person with a personality and a soul. We just hadn’t met yet.


My baby’s birth was a highly planned affair with a neo-natal intensive care team on standby. I had been preparing for this moment for a long time and was surprisingly fatalistic about what would happen. It may seem strange, but I was excited to finally meet my baby whatever the outcome. I guess every mother wants to meet her child, no matter what the circumstances.

The birth was straightforward and my baby heralded his arrival with an unexpected and defiant cry. We named him Bobby.

My husband stayed by Bobby’s side as he was whisked away in a desperate effort to save him. I longed to stay with Bobby, to look into his eyes, to tell him I loved him, but he was gone.

We had organised a hasty baptism which occurred before I was able to get to the ICU and, to this day, I still feel cheated by that. I had missed an important moment…how many more would there be?

Amazingly, Bobby survived for long enough to be transferred to the Royal Children’s Hospital. He was brought to me at midnight so I could say goodbye. I didn’t expect to see him alive again. I was sad, but not distressed. Intellectually, I knew this was awful and tragic, but emotionally I was numb.

I lay awake most of the night in the cold hospital room listening to other mothers’ babies crying. I did not belong in that hospital. I belonged with my baby; a baby who was unable to cry and unable to move.


Bobby was in the intensive care ward at the end of the hallway. I padded down the soft lino floor towards him and was afraid that I wouldn’t get to him in time; that he would die before I got to see him again.

Bobby looked more like a doll than a real baby. His little chest rose and fell with each mechanical puff of the ventilator. I studied his beautiful face desperate to sear his image onto my brain. I was worried that I would forget what he looked like.

His lips were full and pouty, as if he were cross. The dimple in his chin gave him a proud and aristocratic air. I didn’t think it was possible for there to be a more beautiful baby.

Bobby was too brittle for me to hold him and, deep in my bones, I felt that this was wrong. My body was screaming to pick him up; to lift him out of the bed and nuzzle into him. I longed to feel his warmth against me, to have his little body relax against mine as he drifted into sleep. I was hungry for him. But I had to wait.

I sat by his bed, my hand cradling his head. There was nothing else to do. I became an onlooker. A mother is supposed to care for her children and I was unable to do this. It was the hospital staff who cared for Bobby. The medical team made decisions, consulted with each other, read charts, altered medication and adjusted the ventilator.

Not knowing how long Bobby would survive meant that the importance of each minute I was able to spend with him was magnified. And there was Ted to think of. No matter where I was, I was haunted by guilt. If I was with Bobby, I worried about Ted and whether I was spending enough time with him. When I was with Ted, I was plagued with images of Bobby alone in his hospital cot.

Over time, the juggle became our new normal and we just got on with things. Life went on.

I’m still slightly surprised that I was able to chuckle at a joke with the nurses, talk about a TV show or shoot the breeze about the football with my husband while my baby lay next to me fighting for his life. Routine and normality have a way of creeping into even the most terrible of circumstances.

Mine is a story with a happy ending. Three years on and, miraculously, that baby who was so desperately sick is now a sweet, affectionate and funny little boy. Yet I am scarred by the experience of thinking I would lose Bobby – to some extent, the fear has stayed with me. I will forever be grateful to the highly skilled and dedicated doctors, nurses and allied health professionals who saved Bobby, for Bobby’s will to live and for the grace of God that allowed me the privilege of having him in my life.

The views and opinions expressed in this article are those of the author and do not necessarily represent those of the Doctus Project.